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DTSTART;VALUE=DATE:20260430
DTEND;VALUE=DATE:20260503
DTSTAMP:20260604T062618
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UID:10000871-1777507200-1777766399@www.erdheim-chester.org
SUMMARY:11th Annual ECD Medical Symposium - Birmingham 2026
DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Medical Symposium \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites healthcare professionals and researchers. \n\nMedical Symposium: April 30–May 2\, 2026\n\nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00am-4:30pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nCelebration Dinner: 6:00pm-8:00pm\nLocation: Hilton at UAB Downtown \nFriday\, May 1\, 2026\nMedical Symposium: 8:00am-5:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nMedical Symposium Medical Reception: 6:00pm-8:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham \nSaturday\, May 2\, 2026\nECD Care Center Meeting: 8:00am-11:00am\nLocation: UAB Cancer Center \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n	TimeSubjectPresenter\n\n\n\n\n	8:00 amRegistration & light breakfast\n\n\n	8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n	Keynote Address\n\n\n	8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n	9:25 amBreak\n\n\n	Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n	9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n	9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n	10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n	10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n	10:35 amNetworking Break\n\n\n	Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n	10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n	11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n	11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n	11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n	11:50 amGroup Photo\n\n\n	12:00 pmLunch\n\n\n	Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n	1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n	1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n	1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n	1:45 pmNetworking Break\n\n\n	Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n	2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n	2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n	2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n	2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n	Poster Presentations and Networking\n\n\n	3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n	Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n	A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n	Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n	Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n	BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n	Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n	Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n	Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n	Challenging Case Study\n\n\n	3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n	Challenging Case Study\n\n\n	4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n	Closing Remarks & Student Abstract Award\n\n\n	4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n	4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $200 USD and register for only $300 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award . \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nOral / Poster Presentation Abstracts\nFebruary 1\, 2026- Abstracts Due. \n\nAbstract submissions for the Medical Symposium on 1 May\, are accepted here  Please submit abstracts for oral and/or poster presentation.  This is a great opportunity to share your work and the work of your colleagues.  Please let them know of the opportunity.\n\nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nRegister \nOur Sponsors\n 
URL:https://www.erdheim-chester.org/event/11th-annual-ecd-medical-symposium-birmingham-2026/
LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States
CATEGORIES:ECD Medical Symposium,Featured
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260429
DTEND;VALUE=DATE:20260501
DTSTAMP:20260604T062618
CREATED:20251030T142537Z
LAST-MODIFIED:20260410T171905Z
UID:10000955-1777420800-1777593599@www.erdheim-chester.org
SUMMARY:11th Annual ECD Patient & Family Gathering - Birmingham 2026
DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering. \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients\, families\, healthcare professionals\, and researchers to save the date. \n\nPatient & Family Gathering (PFG): April 29–30\, 2026\n\nWednesday\, April 29\, 2026\nMeet and Greet: 3:00 pm-5:00 pm\nLocation: Hilton at UAB Downtown \nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00 am-4:30 pm\nLocation: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCelebration Dinner: 6:00 pm-8:00 pm\nLocation: Hilton at UAB Downtown \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n	TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n	8:00 AM30Registration & Light Breakfast\n\n\n	8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference!  Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n	8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same?  What have we learned recently that makes us believe they are more alike than they once were.\n\n\n	9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n	9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n	9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n	9:45 AM20BreakN/A\n\n\n	10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n	10:20 AM15What should I know about ECD Treatment and My Heart?  Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n	10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n	10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n	11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n	11:45 AM15PicturesN/A\n\n\n	12:00 – 1:00pm60LunchN/A\n\n\n	1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities.  Hear up-to-date answers from those who are doing ECD research.\n\n\n	1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.  Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family:  Addressing YOUR Emotional Needs\n\n\n	2:40 PM20BreakN/A\n\n\n	3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems.  For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc.  These uncontrolled medical problems can compound overall disease burden.\n\n\n	3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n	3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n	3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n	4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance.  Hear why the organization was created and what has been accomplished as a result.  Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n	510\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award. \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nPatient Poster – Submissions\nFebruary 1\, 2026\, is the last day to complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here! \nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nRegister \nOur Sponsors\nThis meeting is made possible by our sponsor\, Father Charles Balnaves of Melbourne\, Australia\, who supports this event in memory of his late wife\, Tanya. We are grateful for Father Charles’ continued\, generous sponsorship. We also appreciate the support of ARUP Laboratories.\n 
URL:https://www.erdheim-chester.org/event/11th-annual-ecd-patient-family-gathering-birmingham-2026/
LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States
CATEGORIES:ECD Patient & Family Gathering,Featured
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250907
DTEND;VALUE=DATE:20250914
DTSTAMP:20260604T062618
CREATED:20250805T142916Z
LAST-MODIFIED:20250805T144821Z
UID:10000463-1757286000-1757804399@www.erdheim-chester.org
SUMMARY:Looking Ahead: Erdheim-Chester Disease Awareness Week Is Coming Soon
DESCRIPTION:As we move into the final weeks of summer\, the Erdheim-Chester Disease Global Alliance (ECDGA) is preparing for one of the most impactful moments of the year—Erdheim-Chester Disease Awareness Week\, observed globally from September 8 through 13. \nThis dedicated week is an important opportunity to raise worldwide awareness of Erdheim-Chester Disease (ECD)—a rare\, life-altering blood cancer that affects individuals across continents\, cultures\, and communities. ECD can affect multiple organs\, including the bones\, brain\, heart\, lungs\, and kidneys. Because symptoms vary widely and the disease is so rare\, diagnosis is often delayed\, making awareness and education especially critical. \nAt ECDGA\, our mission is international in scope. Since our founding in 2008\, we’ve built a supportive\, collaborative community that now includes more than 1\,000 families in over 75 countries. We are committed to ensuring that no matter where someone lives\, they have access to information\, resources\, and a global network of support. \nErdheim-Chester Disease Awareness Week allows us to focus our efforts\, share accurate information\, and highlight the experiences of patients and caregivers around the world. Throughout August\, we will begin rolling out educational content\, awareness tools\, and personal stories from across the global ECD community. These materials will help prepare supporters\, families\, and healthcare professionals to take part in the weeklong campaign. \nThis is also a time for action. We invite everyone—patients\, advocates\, friends\, and medical professionals—to join the movement by following ECDGA on your preferred social media platform. Whether you use Facebook\, Instagram\, LinkedIn\, or X (formerly Twitter)\, your voice and your shares make a difference. Each post helps raise awareness in new regions\, among new audiences\, and with those who may still be searching for answers. \nErdheim-Chester Disease Awareness Week follows two of our most important annual events: the Patient and Family Gathering and the International Medical Symposium\, which were held earlier this year. These events brought together patients\, caregivers\, and leading researchers from around the world to share knowledge\, strengthen connections\, and highlight the latest scientific advancements in Erdheim-Chester Disease. Awareness Week builds on the momentum of those gatherings\, expanding the conversation beyond the conference setting and into the broader global community. \nWe hope you’ll join us throughout August and beyond. Mark your calendar\, follow along\, and help spread the word. Together\, as a global community\, we can continue to shine a light on Erdheim-Chester Disease. \nThe Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice\, diagnoses\, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
URL:https://www.erdheim-chester.org/event/looking-ahead-erdheim-chester-disease-awareness-week-is-coming-soon/
CATEGORIES:Featured
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250615
DTEND;VALUE=DATE:20250716
DTSTAMP:20260604T062618
CREATED:20250606T152433Z
LAST-MODIFIED:20250617T142602Z
UID:10000367-1750028400-1752620399@www.erdheim-chester.org
SUMMARY:Get Ready to Run\, Walk & Roll for Hope! The 2025 Fun Run is Here!
DESCRIPTION:The Erdheim-Chester Disease Global Alliance (ECDGA) is thrilled to announce the 2025 Global Steps Towards Awareness & Hope Virtual Fun Run\, Walk & Roll! From June 16 through July 15\, 2025\, we invite YOU—patients\, caregivers\, supporters\, and advocates around the world—to join our united movement of strength\, visibility\, and hope. \nThis fully virtual event is your opportunity to raise awareness of Erdheim-Chester Disease (ECD)\, an ultra-rare and often misunderstood blood cancer that affects just over a thousand families globally. Whether you lace up your sneakers\, roll through your neighborhood\, or walk a trail with your team\, every step you take helps amplify our mission: awareness\, support\, education\, and research for those impacted by ECD. \n  \nOrder Yours Today! \nKey Event Details: \n\nEvent Dates: June 16 – July 15\, 2025\nRegistration: Opens June 1\, 2025 — $20 per person\nWhere: Anywhere in the world — it’s fully virtual\nT-shirts are available for purchase. Order Today!\nForm a team\, represent your state or country\, and walk with purpose\n\n  \nAll funds raised support our global mission and bring us closer to better outcomes and ultimately\, a cure. Let’s keep moving forward—together. \nRegister Today \nQuestions? Reach out to Renita.Page@erdheim-chester.org \nLet’s step forward with strength. Let’s roll with resilience. Let’s run with hope. \n[usahtml5map id=”0″] \n[worldcountrieshtml5map id=”0″] \nApproved version
URL:https://www.erdheim-chester.org/event/get-ready-to-run-walk-roll-for-hope-the-2025-fun-run-is-here/
CATEGORIES:Annual Fun Run,Featured
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